United Brachial Plexus Network, Inc.

My 7wk. old baby (Lexie) has OBPI but so much of what we've gone thru seems so different from everyone else's story. I almost feel like I should not be on here worrying because she seems so mild as compared to what everyone else has gone thru. At the same time I know we are blessed to have such good recovery this early (altho we're past the 2-4 wks in which she was supposed to fully recover!). My labor was short - 3 pushes (15 min.) and she was out, but the OB said "she has wide shoulders-she had difficulty getting those shoulders out". I found out later she had shld dystocia. She was only 7lb9oz -isn't it supposed to be w/ bigger babies?- but she was 1 lb bigger than my 1st baby and maybe it has more to do w/ my size? In the hosp she had very little movement of her shld, no elbow, but good grasp. She also had a clavicle fracture but not the typical midshaft - it was at the end. In the 1st few wks she gained elbow flexion, but could not sustain her hand to her mouth - again I hear elbow usually comes later. She can now abduct her shld to 90°, sometimes past, and positions in external rotation alot - the PT said none of the kids she sees have external rotation. The PT is concerned she does not have shld flexion (I've seen a tiny bit - maybe 10 or 20°) and says she may have a rupture but she hopes it is just swelling not allowing the nerve impulse across - how long does swelling last? I also read about a neuroma (scar tissue around the nerve not allowing the impulse to pass thru) but is it too early to have that? She tries to push up on her arms on my chest or the floor but goes up at an angle because the left extends more fully. She also mostly holds her head to the left (neglecting the right side). I also notice if she's in supported sitting (swing, bouncy seat) she tends to slump always to the right (affected side). It also seems she kicks the left foot more in her bouncy seat. Anyone have any thoughts? Anyone notice this "domino effect" affecting the whole side of her body, not just her arm? Sorry so long - just looking for answers - thanx for any input!

Hi Anna, I just wanted to comment on one thing that you stated. About Lexie always looking to the injured side...My daughter also did this, as many of our OBPI babies may have torticollis, but sometimes it could cause their heads to become flat on that one side. My daughter is 3 1/2 months old now and so far is heading towards a good "recovery", but when she was around 2 months old I noticed her head shape wasn't normal. The doctors said she doesn't have a bad case of torticollis, but she does have a tiny bit of restriction when looking to the uninjured side which caused the flat spot on the side of her head (deformational plagiocephaly). If you notice your daughter always favoring the injured side then try to get her to look and sleep facing the other side. We were told to do neck exercises by two different doctors, but after I talked to Lisa at TCH she said I shouldn't do them unless we had a cervical spine xray first to make sure there was nothing going on in that area. I wouldn't want to damage her further. So I just wanted to say that you should check her head and make sure you see no difference on the injured side. I am sure very few people who have children with torticollis or any kind of muscle restriction do not have to worry about plagiocephaly, but it could happen, as it did to us. Finding this at an early time could make a world of a difference. Take care and good luck with Lexie.
Krista

Hi Anna, My daughter Jaime went through the same thing. The doctor mentioned that Jaime had torticollis. Her head seems to be rounding out now. She will be 2 at the end of July. But for some time her head was alittle flat from turning it to one side. Her right arm was injured and had a weird twist to the hand. I do not know what that is called. It really scared me to look at it. But by 4/5 months it went away. To look at her now you may not notice any injury. But I can notice that she has a tendency to do things with her left hand and that the right arm doesnt seem to lift completely straight up. The doctor says she is at 90 percent. She seems to be doing well. It is still hard to tell at this time how much damage was actually done. We will have to wait and see what limitations she will encounter down the road. I hope everything works out for your baby. Just keep asking alot of questions. You are lucky to have found this message board. I wish I would have known about it earlier on. Keep us informed of the progress.

Hi Anna and welcome (unfortunately) to our internet 'home' !

We welcome everyone here - those with kids who are severely injured and those with mild injuries. I guess the people whose kids have severe injuries stay around longer because we need more support and the rest kinda fly away when their kids are better...can't say I blame them!

I wanted to point you in the direction of some materials we have online that we put together for bpi Awareness.

The main document I want you to look at is our sheet for parents with newborns:

http://ubpn.org/awareness/A2001Rnewparentguide.html

This is a general type of page that will give you information about timelines and so forth. I think that even if your child has a mild bpi injury, it's important to have your child evaluated by a brachial plexus specialist. The are finding that children who may have good recovery still may have things start popping up as they get a bit older - so it's good to get checked out. The specialist will let you know what they think the injury is, based on the movement your child has and can also lead you in a good direction for therapy and other modalities that may be used to help your little one.

Therapy is important - range of motion is important. Information about all of this is found in the Awareness section - under birth injuries. I'd like to point you in the direction of another page - it is the Margaret Storment Therapy page and also Stretching the Limits. Both may be helpful for you at this time.

Please tell us where you live, as there may be a specialist close by. Also - some doctors can do an evaluation by video.

About the torticollis - Maia had this as many children with bpi do. We got her to look the 'other way' by putting music on that side of the room and by facing her crib in the right direction. The best helped was this crib toy we purchased - it was a Fisher Price toy that played music and did this little light show - it hangs in the crib. We would hang it on the affected side and Maia hd no choice but to want to look at it. The torticollis resolved pretty easily (and I think it was because of that toy!) I saw what they did with Maia in therapy and watched other kids therapies while we were there... and basically they would sit the child up and make noises or wiggle toys on the other side to get them to look that way... anything to get the head to move in the other direction.

Anyway, take care and hope your sweetypie gets more and more function back!

keep in touch and ask a lot of questions!
-francine

http://www.injurednewborn.com
http://www.injurednewborn.com/maia/homepage.html

I do have a friend who's daughter had a BPI and she fully recovered. She's 12 now(the same age as my son) and there is no lasting problems. I hope and pray the same will be for your baby! Keep the faith.
T.

your baby is doing great!!!
I wanted to point out that all the swings and bouncey seats cant give what good old fashioned rug on the floor or wrapped sling around mama can give- the on the floor benefits are great as are the being held ones all that said- with my first ones I cherished my baby swing- CHERISHED it!
CONGRADULATIONS ON YOUR NEW BABY and her great progress!!!!!!

Francine, when you say bpi specialist, do you mean a doctor or a therapist? The PT we found specializes in BPI and sees most of the kids in this area (we live in the Melbourne, FL area - a little south of Cape Canaveral). But the orthopedist we went to (to check her calvicle fracture) knew very little - said therapy would be of no help - basically his comment was "PT won't do anything to help nerve regeneration" - and didn't want to hear any of my views. As for the torticollis, she actually looks away from the BPI arm - as if she is not aware the arm is there. I'm a ped OT and I checked her and my PT friends checked her and we all felt there is not a true torticollis (no tightness), but a preference to hold her head to that side. And yes actually we have that toy! But at this point, all of my calling to her, making noises, etc. doesn't help. But I think as she gets older and more aware it will. She will turn her head to the right, it's just more often to the left. And on her tummy she never turns it to the right - I think because she's working so hard at using her other muscles. And yes marymom, she does get lots of holding time! And tummytime and time lying on both sides. But there are times w/ a 4y/o and everything else that needs to be done that the swing and bouncyseat are a Godsend! Thanx for everyone's input!

I can't find my reply so I'm trying again! Sorry if I reply twice!

Francine, when you say bpi specialist, do you mean doctor or therapist? The PT we found specializes in BPI and has a support group in her office, but I would be interested to know if there is an M.D. near in case we need one. We live in the Melbourne, FL area (near Cape Canaveral where they launch the Shuttle). The orthopedist didn't want to listen to me about therapy - said it would do nothing to help nerve regeneration - duh!!! - didn't want to hear my views (I'm a ped OT and have seen kids w/ BPI closer to 18mo/2yrs/3yrs after they've gone thru PT or in conjunction).

Anyway as for the torticollis, she actually looks away from the bpi side - neglecting that side/lacks awareness that her arm is even there). I checked and 2 PT friends checked and there is no tightness, but I'm afraid she could create a torticollis. And actually we have the same toy! I was using it the same way, she will look to that side on her back, while held or in sitting; but on her tummy she's so focused on using other muscles it's too difficult to turn her head.

And marymom, yes she gets lots of holding time and tummytime and time on both sides! But there are times the swing and bouncyseat are a Godsend w/ a 4y/o sister and everything else needing to be done!

Thanx for everyone's input!